The Patient Reported Data (PRD) Program helps clinicians, researchers, and others collect information directly from patients via electronic questionnaires. Data is integrated into the electronic health record, where it can be:
- Viewed in real-time by the patient’s care team
- Collected consistently and systematically over time to track a patient’s progress
- Aggregated with other patients’ data to identify medical and quality-of-life issues or trends
The PRD Program’s tools and data are targeted to specific clinical situations and are continually expanding in response to emerging needs.
The PRD Program’s services include:
- Needs assessment: Review the content of a tool and assess the feasibility of building and deploying it in the electronic health record
- Build tools: Build an electronic data collection tool in the electronic medical record
- Implement tools: Deploy a tool to identified populations
- Analyze data: Review key performance indicators; provide data for research and operations
- Research and innovation: Create population health interventions, facilitate patients’ access to resources and services, and/or support research based on PRD
- Enhancements and modifications: Review tools and make enhancements or modifications to make tools more effective
Project highlight
PREMM5 Lynch Syndrome Screener
Lynch syndrome is the most common inherited cause of colorectal and endometrial cancer. Lynch syndrome cancers often occur at young ages and can be prevented through surveillance and prophylactic surgery. The identification of Lynch syndrome is low due to lack of public awareness and provider- and institutional-level barriers.
The PREMM5 model, a clinical prediction algorithm developed by DFCI researchers estimates the cumulative probability of germline mutations that cause Lynch syndrome based on personal and family history. Although recommended by national guidelines and available on the Dana Farber website, widespread adoption by healthcare providers has remained sub-optimal. The PRD program and the PREMM investigators developed a patient-facing version of the PREMM5 model that aimed to systematize the identification of Lynch syndrome patients by integrating the model into the electronic medical record system. The PREMM5 screener can be completed via the patient portal (of the electronic medical record) or on a tablet device in clinic. Once the PREMM5 screener is completed, the patient’s risk of carrying a Lynch syndrome mutation can be viewed by the patient and by the patient’s care team in the electronic medical record.
Benefits
The PREMM5 patient screener is being piloted in DFCI’s Gastrointestinal Cancer Treatment Center. Care teams can review results immediately and refer eligible patients to DFCI’s Cancer Genetics and Prevention Clinic. The project demonstrates the feasibility of building and scaling a complex scoring algorithm for cancer risk assessment in the electronic medical record system.